Families struggle to get state-mandated insurance benefits for autism

Todd Loesch

3/23/10 2:43 PM

Just before Thanksgiving, Ember and Mike Burke faced the very
real threat of stopping therapy and treatment for their 3-year-old
son, Brendan, who has autism.

The Burkes' insurance company, Blue Cross Blue Shield of
Illinois, owed them nearly $4,000, and a company spokeswoman told
the Park Ridge family the check wouldn't come until well after the
holidays, says Ember, who called back a few hours later, pleading
with the company to expedite the process.

"I spoke to her on a real, personal level," Ember says, asking
her to do something, anything to help her son. The Monday after
Thanksgiving, the Burkes received a check, allowing them to
continue Brendan's many therapies.

Slideshow: A day with the Burkes

The Burkes may seem like a success story, and in many ways they
are. But more than a year ago, Illinois passed a new law mandating
increased insurance coverage under many plans for families with
children with autism. The idea was to help families struggling to
pay for the overwhelmingly expensive treatments and therapies.

Yet months after the law took effect, few families have had
success claiming the mandated coverage from their insurance
companies, according to Dr. Maureen Sweeney, who treats children
with autism at her practice in Skokie.

Those who have been successful, such as the Burkes, have often
faced frustration, inconsistency and endless phone calls and
paperwork.

The law, which took effect Dec. 12, 2008, helps families by
mandating coverage of up to $36,000 a year for the diagnosis and
treatment of autism.

Because of the law, the Burkes say they have saved almost $2,000
a month. Any insurance policy issued, delivered or renewed after
that date is required by law to include autism coverage. Prior to
the law, according to Louis Pukelis, of the Illinois Department of
Insurance, there was no state law requiring insurers and HMOs to
provide coverage for autism specifically. Nearly 20 other states
have insurance laws relating to autism coverage.

Even though they had to wait until June 2009 for the policy
renewal that made the Illinois mandate apply to them, the law was a
godsend for the Burkes.

Frustrations build

Mike runs a plumbing company with a group insurance plan. Even
though the Burkes qualified for the increased autism coverage under
the new law, problems arose after they maxed out on their old
insurance limit. Ember faxed copies of the therapy receipts to the
insurance company, but the claims were denied, she says.

"Now what I've learned is that when you get denied, you don't
resubmit; you need to call them right away," she says.

Those calls, however, led to even more frustration.

"Everything is just so inconsistent," she says. "One person will
tell you one thing and then a week later somebody will tell you the
opposite." One day, as she was going through claim after claim with
an insurance company representative, she started sobbing.

"I finally just started crying and my 5-year-old goes, 'Mommy,
did you just get fired?'"

After months of dealing with seemingly endless stress and
frustration, the Burkes finally began seeing rays of hope. Ember
found an insurance representative who went above and beyond the
call of duty to help her family. And she developed an
extensive-but-helpful system to keep track of the mountains of
claims paperwork.

She keeps all the related claims, receipts and reimbursements
stapled together. Each claim is filled out and a copy of the claim
and receipt is faxed to the insurance company. Ember then follows
up to make sure the insurance company got the fax-even when she has
received confirmation. She also keeps a checklist of every payment
to keep track of reimbursements and check them off her list.

The file has grown to more than an inch thick since June. "I
just knew I had to come up with some type of system to make sure we
were getting back everything we had put in," she says.

Between the paperwork and the constant phone calls to the
insurance company, Ember estimates she spends up to four hours per
week making sure they've been reimbursed. Recently, though, she
says the process has become much smoother, and her claims are
flowing through more regularly.

The fallout

The Burkes, with their relatively happy ending, say they hope
they can help others.
Very few families across Illinois have been successful claiming
money under the law, even one year later, says Sweeney, who
practices with Sweeney, Augustin and Associates in Skokie. She says
the Burkes are the only family she knows of who have actually
gotten more insurance money under the state mandate out of the more
than 100 families in her practice.

Much of that has to do with the fact that the law has several
loopholes. "There are a whole lot of exceptions right from the
get-go," Sweeney says.

Michael T. McRaith, director of the Illinois Department of
Insurance, says the policy changes Illinois law, but it doesn't
overrule federal laws that may apply to some people. For instance,
the law doesn't apply to "self-insured, non-public employers,"
self-insured union plans or insurance policies issued in other
states.

"Illinois is engaged in a market-wide investigation into how the
law is being used by companies and whether consumers are
benefitting like the legislature envisioned," McRaith says.

In response to an inquiry for this story, Blue Cross Blue Shield
of Illinois declined to comment. By December, when the Burkes
called Blue Cross Blue Shield, representatives still often pleaded
lack of knowledge because the law was relatively new.

But that answer doesn't satisfy Ember. "It might be a very fair
excuse from their standpoint, but not for us," she says. "We're
paying a lot for insurance."

Todd Loesch writes for the Medill News Service, a part of
Northwestern University's Medill School of
Journalism.